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Book that explains dementia to children is world first

This news post is over 6 years old

Social enterprise the Ally Bally Bee project is creating a website which allows people to create an illustrated personalised book for their children

An Edinburgh couple are attempting to create the world’s first personalised children’s book service to explain dementia to young people whose loved ones have been diagnosed.

Faced with one day explaining to their baby daughter that her great-grandmother had been diagnosed with dementia, Matthew Adams and Nina Äikäs came up with the idea of the book. They thought if individaul families could tailor character names and dementia-related behavioural traits to their own situation, children would understand what is going on a little bit more easily.

Two years on, with now two-year-old daughter Lana’s help, Matthew and Nina have been working hard in their spare time to bring the Ally Bally Bee Project social enterprise to life.

With money raised from a Kickstarter campaign (video above), the Äikäs-Adams family (pictured below) plan to develop a website to allow visitors to customise and buy a book about dementia for their own children.

Customers who visit the site will be asked who the book is for; who the person living with dementia is; and how the disease affects their behavior.

This, with a few clicks, is automatically processed into a beautifully illustrated book which can be delivered anywhere in the world or that can be downloaded as an ebook.

Those who buy a book will even be offered the opportunity to write a short dedication on the inside cover. The profits from each book sold will be donated to a dementia organisation of their choice.

Project founder Matthew, who is a digital marketing manager who has worked in the UK charity sector for more than six years, explained: “I recall one evening, sitting around the table with the family, discussing the way Nina’s gran had been acting and the things she had been saying.

“It was tricky enough for us adults to make sense of – so how would a child make sense of it? It got me thinking: how would I explain granny’s dementia to my daughter?

“The question ‘how do you explain dementia to a six year old?’ stuck with me and has been the basis of the project’s mission ever since.

“Children's books about dementia do exist, and personalised children's books exist. We decided to combine the two.”

The family employed the services of illustrator Daisy Wilson and author Elvira Ashby, and have used their own money as well as some grants they managed to secure to get it this far.

They launched a Kickstarter campaign (below), to raise funds to develop the website, and were ecstatic to see the £3,000 target reached – in less than three days. It’s now close to £5,000 and continuing to rise each day.

"Reaching the Kickstarter target was amazing – doing it in three days was unbelievable,” Matthew continued. “I checked it two times that morning before I noticed.

“Even although we've hit the target, we'll continue to shout loud and proud about the Kickstarter. The more we raise, the bigger and better the website will be.”

As well as gaining support on Kickstarter the project's fanbase is growing across the web with thousands voicing their support of the idea.

The project has over 16,000 followers on Twitter, and Matthew presented it at the Alzheimer Europe Conference in Copenhagen 2016. It was also accepted for a presentation at the Alzheimer’s Disease International conference in Japan this year – but, due to the travel costs involved, Matthew and Nina couldn't make it.

To view the Ally Bally Bee Project Kickstarter video and contribute to the project visit

Ally Bally Bee Project – Kickstarter rewards

Pledge £1 – the team will send you good vibes and hugs through the air!

Pledge £5 or more – your name will be added on the thank you section of the webpage

Pledge £10 or more – you will also get a personalised social media mention

Pledge £13 or more – they will throw in a PDF version of the book

Pledge £20 or more – and you will get the hardcopy version

Pledge £30 or more – you will also receive an illustrated thank you postcard from the team

Pledge £50 or more – and the thank you will be in a personalised video

Pledge £75 or more – illustrator Daisy will sketch your portrait in pencil

Pledge £100 or more – illustrator Daisy will sketch your portrait in colour

A variety of sponsorship packages are also available for individuals and organisations priced from £200 - £2000.

All details on the Ally Bally Bee Project page.



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